Pharma
Industry Hub
Driven by our mission to bring practical treatment quickly and safely into current medical practice, FAST has turned itself into a hub for the convergence of family, community, scientist, clinical, and industry perspectives. We firmly believe that collaborative efforts across these groups is what will yield accelerated progress. This spirit is nurtured through multiple communication channels, as well as a series of in-person scientific events. These include:
FAST Global Science Summit
FAST’s annual Global Science Summit & Gala is the biggest science and drug development event devoted to Angelman syndrome. Learn more by clicking here.
Global Reach
We know that we represent a rare disease in a competitive space—one made up of thousands of researchers from all over the world, hundreds of pharmaceutical companies, clinicians, investors, educators, policymakers, and more. Our success in attracting and keeping attention on our cause comes in part from our ability to make our partners aware of the global footprint of AS, which is larger than many assume, and to showcase that there are significant subsets of our community that are deeply informed about the relevant science, sophisticated in their approach to it, and ready and willing to participate in clinical trials. For more about our global chapters, please visit us here.
Registry Insights
The Global Angelman Syndrome Registry (GASR) is an initiative to collect and collate data on individuals diagnosed with Angelman syndrome worldwide. Parents and caregivers drive data collection by contributing information on diagnosis, medical history, development, and more in a series of online modules. Modules can be modified and added to reflect the current needs and landscape, providing purpose-built data and reducing data duplication. Data is available to anyone with a desire to progress in understanding and outcomes for Angelman syndrome. For more about the registry, including how to receive data from it, please visit here.
Angelman Syndrome Biomarker and Outcome Measure Consortium
The A-BOM Consortium is made up of a team of over 350 people that have interest in advancing the regulatory science for Angelman syndrome to understand, develop, test, and validate different tools that can assess meaningful clinical outcomes for individuals living with Angelman syndrome. For more information about A-BOM, please visit here.
INSYNC-AS
The International Angelman Syndrome Research Council (INSYNC-AS) is a collaboration between FAST and the Simons Foundation Autism Research Initiative (SFARI), designed to bring together world experts outside of the Angelman syndrome space to help support advancing AS in areas of drug development that we are not currently invested in. For more information about INSYNC-AS, please visit here.
Translational Research Symposium (TRS)
A closed non-public forum dedicated to scientists, industry members, clinicians and regulators, is known as the FAST Translational Research Symposium and ABOM (Angelman Syndrome Biomarker and Outcome Measure Consortium) Scientific Meeting, where dozens of scientists and experts from around the world working in the AS field present their pre-published research, updating the scientific community on their latest findings in order to encourage collaborations, relationships, and progress in Angelman syndrome translational research and regulatory sciences, both clinical and pre-clinical. For more information on TRS-ABOM, click here.
Community
In an effort to foster the highest level of transparency between pharmaceutical companies and the AS community, FAST welcomes and hosts a robust channel of communication for all stakeholders.